Increasing dizziness

Posted by danafitz @danafitz, 2 days ago

Hi - I’m new to the group & have a question about increasing dizziness. I am a 63 year old woman & was diagnosed with HOCM (& SAM) about 4 mos ago. I’ve seen a cardiologist for 40 years, off & on for palpitations, but was misdiagnosed (mitral valve prolapse), etc. I’m on 50 mg metoprolol ER daily. The dizziness comes on suddenly, sometimes even before I get out of bed in the morning. I drink LOTS of water throughout the day, even before I get up. Is this common? I’m concerned about exercising when I feel like this. I’m trying to maintain my same activities - spin class, strength training - while keeping my heart rate at <110 BPM (per cardiologist). However, sometimes the dizziness comes on very severely after a spin class & takes me out for the entire rest of the day. Last weekend I even had visual auras with it - which I’ve had with migraines in the past, but I felt awful. I don’t know how to handle this. Any suggestions would be helpful. Seeing my cardiologist on Friday. I haven’t been to a COE yet. Thx.

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cindy | @cindyw9999 | 2 days ago

I experienced the exact same thing. You should go to a COE as it made a huge difference for me

Horrible feeling to be dizzy!

Good luck

sassyrdh329 | @sassyrdh329 | 2 days ago

Im 77 have, HOCM and am taking 10 mg Camzyos since 1/26.
My dizziness constant and so are my headaches.
Dizziness almost feels like an equilibrium problem so doc sent me to an ENT who diagnosed BVVT. Im doing head and neck exercises but they don't seem to be going much.
I know I'm alot older than you but I hate the fact that I cant do so many of the things I used to do - like walking in a straight line!
I think all of this has to do in part by the heart condition and partly by the medications we're on to help the condition. My heart is doing much better in the camzyos but the headaches, dizziness and fatigue is difficult to live with.
I hope you find out what is causing your dizziness and can get back to your normal routine!

Linda, Volunteer Mentor | @walkinggirl | 2 days ago

Hello @danafitz and welcome to Connect. I am sorry you are feeling dizziness which certainly makes life uncomfortable. We do not give medical advice here on Connect but share experiences and make suggestions. Going to a COE is a good step, perhaps there are alternatives that would eliminate the dizziness. My only experience with dizziness was after a septal myectomy, my lucky heart developed electrical issues and I now have an ICD. I take 50mg Metaprolol daily. Have you had a stress test? When does the dizziness happen most often?

danafitz | @danafitz | 2 days ago

The dizziness seems pretty random. Altho, like I mentioned, it can happen after a cardio workout that takes me out for the rest if the day. My conclusion is that I must have pushed myself too hard. I’ve had a recent stress MRI & echo.
Do I need a referral from my cardiologist to get into a COE?

Linda, Volunteer Mentor | @walkinggirl | 1 day ago

In reply to @danafitz "The dizziness seems pretty random. Altho, like I mentioned, it can happen after a cardio workout..." + (show)

@danafitz One can request an appointment on their own at Mayo: https://www.mayoclinic.org/appointments/new-concern. My cardiologist here in eastern Upstate NY referred me to Mayo Rochester in early 2022. All of my tests and related items were sent when I was referred. May I also suggest registering with the Hypertrophic Cardiomyopathy Association 4hcm.org? If you look at that website, you will see a box on the upper left to Schedule an intake call. All services from them are free and their specialty is assisting HCM patients and their families. There is a list of COE institutions. Look here to see if one is near to you - scroll down https://www.4hcm.org/center-of-excellence. It's quite probable that one can make an appointment on their own at any of those highly rated HCM institutions In my opinion, it is worth the travel to a place where experts in HCM help patients. My dizziness, giddiness and I had a couple of syncope was due to arrythmia. My ICD, Buddy, eliminated all of that. Has your doctor explained the results of your echo and stress tests?

danafitz | @danafitz | 1 day ago

Thank you for all the helpful info! I definitely need to get plugged in. My cardiologist did a good job of explaining my test results to me. He is pro-medication to manage my hocm & seemed pretty negative about surgery. I want to make sure I have explored all available options.